Sometimes I get a little daunted when May 12th rolls around each year, wondering what new I can say about the subject. If you didn’t know, May 12th is Invisible Illness Day; a day to bring attention and awareness to illnesses and diseases which don’t manifest obvious outward symptoms for the world to see. If someone has the measles or is in a wheelchair, you can hopefully tell that just by looking at them. Diseases like fibromyalgia*, Chronic Fatigue Syndrome*, Crohn’s Disease, multiple sclerosis, mental health problems, Complex Regional Pain Syndrome7, Celiac Disease, lupus, rheumatoid arthritis, Lyme disease and the one I have, myalgic encephalomyelitis* (ME for short) are considered invisible illnesses. This is by no means a comprehensive list, just a few examples.

According to Wikipedia and the 2002 US Census Bureau, 96% of chronic illnesses are invisible. This adds in an enormous extra challenge in obtaining proper medical care and treatment as well as being misunderstood by the population in general. If people don’t know that there are quiet, private, hellish wars being fought every day by millions of people all over the world, how can we ever expect our treatment to improve, let alone find cures?

That’s why May 12th is so important. We, the sick, need people to understand, to care, to help us advocate when our treacherous bodies won’t allow us to. Awareness is the critical first step in any change happening.

Why is it so important that we treat ME? What makes our disease so special?

It can be fatal. People die from this. If not from the disease ravaging our bodies for years and decades, then it often comes by our own hands as we can no longer endure the daily torment.

No one should have to live like this. As someone who has what’s considered only a “moderate” case of ME, I can tell you it’s a living hell. Pain is nearly constant, sometimes to the point where I’m in tears and desperately wishing to die. It takes away the plans you had for a normal, fulfilling life. Careers, hobbies and passions are taken from you. You either simply cannot expend the energy on anything non-essential, you lack the basic funds to sustain most pursuits because most of us can’t work, or your brain is compromised by what we call “brain fog” and you’re unable to focus on and accomplish anything. (More on brain fog later.)

We deserve to live happy, fulfilling lives, just like everyone else. When you’re constantly in pain, always exhausted and unable to think clearly, this doesn’t leave much room for whatever kind of life you wanted for yourself. And when I say exhausted, I don’t mean that we’re tired because we didn’t sleep well the night before. On a good day for me, it’s like how other people when they have the flu. A constant, crushing weight that makes the slightest exertion a Herculean effort. On bad days all I can do is lay in bed and drag myself to the bathroom periodically. Sometimes even feeding myself is a challenge. I might have to choose between feeding my animals or myself, because I don’t have the energy for both. And of course the animals always win; they’re my responsibility.

I am mostly house-bound and I require help with the sort of tasks I used to take for granted. Forgot something at the store? No problem, just go back tomorrow! Nope, not with ME. Any time I take a trip outside my home, I have to plan at least one full day of recovering at home from it. If it’s something late at night, very noisy and extra stimulating, plan on 2-3 days at least. (But frankly, late night, noisy, stimulating activities happen EXTREMELY rarely because of the damage they cause later.) When I do gather my strength to photograph models, that is my exertion for the entire week at least.

ME is extremely isolating. You can’t just go hang out with friends. You can rarely make it to family functions. Last year, I had to miss a surprise party thrown for my own mother, something which still upsets me today. I was just too exhausted to go, and I knew that if I REALLY pushed myself and forced myself to go, I would pay for it for a very long time.

ME is vengeful god. If you violate any of its insane decrees, you WILL be punished. Probably for a long time; sometimes forever. There have been cases where someone with ME did just a little too much one day, they spent the next day in bed… and then they were never able to leave it. At the same time though, if you try and do as little as possible, your energy supply will shrink and you’ll be worse off too. Damned if you do, damned if you don’t.

Right now ME received approximately 5 million dollars a year in funding from the US government. To put that in perspective, that’s about the same amount given to researching hayfever. Male pattern baldness gets at least four times as much. HIV/AIDS, which is comparable in both frequency in the population and severity of illness, gets about 600 times that amount. I’m not saying that HIV/AIDS patients shouldn’t receive that much; I think they should! What I’m saying is that ME needs to be recognized at all levels of society and government as the deadly, hellish disease that it is and get proper funding as well.

This year I decided to do something that was a big stretch for me physically. I planned a set of self portraits (all shot at the same time) with a rather complicated makeup look for my Enchanted Sleep series on living with ME. Doing that much makeup on myself normally would have been enough exertion for one day for me, but that plus shooting the images, even with Geoff’s generous help, put me in bed for days afterward with migraines pounding my head. But I’m not sorry. It was worth it.

Oh yes, brain fog. (Which I’ve got a bit of as I’m writing this.) It’s like when you have a fever and can’t concentrate or think clearly. Sometimes it reaches new heights where people suddenly can’t spell, remember their names or understand their native language. Most days it’s more like mentally wading through a bog, at least for me. I decided I wanted to portray this visually in the images I created since it’s such an annoyance at best and terrifying at its worst. I think it will be obvious how I incorporated that element into the images.

I have the video I took of me applying the makeup as well as the finished photos to show you, but I want to issue a challenge as well! I want you: you, who are reading this right now, to #GoBlue4ME! Why blue? Because that’s our disease’s awareness ribbon color. What does “going blue” mean? There are any number of things you could do to go blue. I created a couple images that you could use as your profile photos for May 12th, or even this whole week (or more!). You are more than welcome to download them and use them however you’d like! You could dress all in blue and post a photo of yourself with the #GoBlue4ME hashtag on any of your social media accounts. You could get a bunch of blue balloons, take a photo of them and use the hashtag on them too; anything blue works!

For makeup artists, I’m issuing a special challenge. As you’ll see in my video applying my makeup, I used ONLY blue shades for this entire look. Foundation, concealer, eyeshadows, blush, mascara, EVERYTHING. I challenge you all to do the same and post your looks using the #GoBlue4ME hashtag! If you’re on YouTube and create makeup tutorial videos, this would be perfect for you. There are so many fun makeup challenges going around YouTube, Instagram and other social media sites; let’s make this the next big trend! You’ll not only be stretching yourself, you’ll be contributing to a wonderful cause and helping us raise awareness for the whole world!

I did allow myself to use shades of teal, green and purple in my look because they’re offshoots of blue and I really thought it would make for a better overall look, so feel free to do the same. And you don’t have to make the blue tie into your foundation color as well, but bonus points to you if you do. 🙂 Let’s have some fun, create gorgeous looks and help a community in need of a lot of support by coming together!

Ready to see the video and my images? Here you go! I’ll be releasing the images individually over the course of the week leading up to May 12th, but you can always find them all here.

And please, pass these around! Share the links, video and images with anyone and everyone! We have to make a lot of noise to get the change we so desperately need. You have my full permission to share far and wide!

And please, if you take up the #GoBlue4ME challenge, let me know! Of course, I can search the hashtag and see what you guys have been up to, but I’m very excited to see what you come up with!

One last note, your going blue does NOT need to happen on or before May 12th. Keep doing it as long as you’d like to! The longer we can keep the word spreading, the better.

Thank you to absolutely everyone who has and will participate in this! You are helping so many more people than you know. I thank you from the deepest wells of my heart.

*[There are various theories and arguments about weather ME, CFS and fibromyalgia are all the same disease or separate. You’ll find as many different opinions as there are sufferers. It is my personal belief that they’re probably all the same thing, or at least all very closely related. Some people are extremely militant about using the “correct” name; I find it more important to help people understand by using the name they’re most familiar with. I tend to use them all interchangeably depending on the situation and who I’m talking to, but if I had my druthers, I’d simply call it ME and be done with it.]

Well. I’ve been meaning to tell you guys for FOREVER about the adventure I had surrounding my sinus surgery. It’s a little bit long of a story; I will try and keep it brief but there was just a lot that happened, so I can’t promise anything.

From mid-July through the end of October, I was getting colds, repeatedly. I’d get a cold, get over it, have about 2-3 weeks of more or less “normal” (for me) time, then get another cold. One of these colds lasted for 3 weeks, 1 turned into strep throat and another turned into an ear infection so exquisitely painful that I gave serious thought to gouging the ear out of my head. After a string of doctor visits, I was eventually sent to an ENT; an ear/nose/throat specialist. I loved him right away.

He immediately agreed that this was abnormal, took a glance inside my nostrils and since there was nothing obviously wrong inside sent me off for some allergy blood tests and a CT scan of my sinuses. The office was shockingly quick at getting this all set up; I’ve come to learn they are an extremely efficient and well-oiled, patient-loving machine.

The allergy tests showed a mild allergy to Timothy grass and mold, neither of which surprised me and both were too mild to be to blame for my illnesses. The CT scan however showed inflammation and serious congestion in my sinuses, particularly on the right side and more toward the back of my skull. I hadn’t ever really given a lot of thought to just HOW MANY sinus cavities you have in your body, but it’s rather a lot, as this image shows:

My ENT recommended a surgery where he would go in and clean all the cavities out (while I slept deep in anesthesia) because it clearly wasn’t going away on its own. If I did nothing, the cycle of colds every 2-3 weeks would just continue, which was obviously not a livable option. And it also happens that my doctor is not only an ENT specialist, but that he specializes in this exact type of surgery! And Geoff has had this exact surgery twice! I felt I was in very good hands with both of them taking care of me, so I agreed to have the surgery done.

Before

November 4th Geoff woke up very early and drove me to the surgery center. While I’ve had my nerve-blocking injections countless times, this was the first true, actual surgery I was going to have. They knock me out for a short time for the injections, but it’s just a sedation, not actual anesthesia. I was a little nervous, but mostly just excited to have the stupid sickness cycle stop. I woke up with a sore throat; they’d had a little trouble intubating me (I’m guessing because I’m so small) and a little nauseated, but they gave me some nice drugs which cleared the nausea right away. My ENT had taken a swab of the gunk in my sinuses and sent it to the lab to do a culture on it and see if it was anything that needed further treatment. So other than a slightly sore throat, it was all very routine.

After – very sleepy looking. Get used to the “mustache bandage” look. I don’t know why my gown looks like it’s going to fall off at any moment.

The next couple days are a bit of a pain-filled blur in my mind. Thankfully, Geoff stayed home with me to get me through the worst of it. Of course, ALL my sinuses were inflamed and unhappy and my throat was really starting to hurt. I’d expected to feel like I had a bad cold afterward but this was a whole new level of sinus and throat pain which I’d never experienced. Geoff was able to call my doctor and explain my incredibly sore throat (talking was not going to happen from me) and he immediately prescribed the most beautiful, soothing numbing gel to gargle with. It was a little messy, and about the consistency of pudding which made it hard to actually gargle, but oh my GOD did it work. It turned me from the strep-throat severity of pain where breathing feels like inhaling shattered glass into something mildly uncomfortable when it wore off. More points for my doctor!

Over the weekend, I started feeling better and better and by Monday, 6 days after my surgery, I decided I could run a short errand to my nearby craft store, since I had a really spectacular coupon which was about to expire. As I reached for my purse (in a position I’d been in multiple times since the surgery) I felt something warm and wet in my nose. I grabbed a paper towel, not thinking much of it until I saw I’d dripped blood onto the kitchen floor. And then it REALLY started pouring.

I managed to grab a large wad of paper towels and run into the bathroom. I have never bled like this in my life. It was like all the veins in my sinuses just gave up and let loose. It seemed to be coming mostly from the right side of my nose and very far back; if I tipped my head up or even held it level, blood waterfalled down my throat. In a mild panic and not knowing what else to do, since I didn’t want to be swallowing all that blood, I held the paper towels to my face, leaned forward and let it drip into the bathroom sink. And fortunately, I had my cell phone in my pocket, so I called Geoff, who had just gotten to work. I was stuck in the “fright” of the “fright or flight” response and couldn’t think of anything else to do.

We discussed if I needed an ambulance and I just didn’t know; I did notice that after the initial panic, as I tried to slow my breathing and calm myself, the bleeding slowed a little, which gave me some hope. Geoff called the ENT’s office and came right home, but we both knew it would be about 45 minutes before he got there. So Geoff called John, one of my wonderful neighbors, hoping he was home. John wasn’t home but he was close by. He dropped everything and came rushing home to check on me until Geoff got there. I later found out that John had been about to get his car washed and was about to send his car through the machine where the initial cleaning is done and there were people lined up behind him. The car wash people told him it wouldn’t take long to go through the machine and then he could just leave, but John made everyone move their cars so that he could leave right that instant. That’s the kind of people my neighbors are. They more than have my back.

John got home and at that point the bleeding had mostly stopped so we agreed an ambulance wasn’t needed but he sat on the bathroom floor with me and told me stories to calm and distract me until Geoff got home. He was an angel. (And just to be clear, my other neighbor, his wife Donna, would have been equally adept in his role. John happened to be closest to home so he took up the task, but Donna certainly would have done the same if she’d been around. After all, she helped me take care of the opossum littler I found!)

After I’d calmed down and the bleeding leveled off, I took a few photos of the sink to record it. The photos look dramatic, but every person who actually saw the copious blood agrees they don’t do it justice at all; both Geoff and John said it looked like a bad Halloween party decoration. But to give you an idea, here’s one of my cell phone captures.

This photo actually came from Geoff’s camera, not mine. His takes much better photos than mine does. It looks like a fair bit of blood, but trust me, it was much, MUCH worse in person. Geoff was also a saint for cleaning up the whole bathroom by himself, which I felt bad about, but I was under strict orders to REST and lay down.

So Geoff and I went back to see my ENT. He took a look around, determined that yes, I was bleeding rather a lot and decided to pack my nose. Apparently, he’d used a gel-like packing while I was out for the actual surgery; it was similar in texture to Jello. I couldn’t even tell that there was anything in my nose, it was so mild and comfortable. The new packing however was NOT pillowy and Jello-like. I can only describe it like having an entire tampon made of broken glass and cacti bits shoved up one nostril. And that’s after they sprayed a numbing spray inside my nose. My eye watered and watered on that side of my face but I did not cry.

The packing was so incredibly uncomfortable that I couldn’t even talk or all the glass shards and cacti quills jabbed at me from inside my nose. I was to keep it in for two days to really stop the bleeding, then I could have it out. I wasn’t exactly happy, but I was glad to have the bleeding stopped.

Bandaged up with packing up my nose, taped to my cheek

The rest of the day, I communicated with Geoff through gestures, grunts and writing things down. At one point I laughed quietly to myself and wrote “this is like The Leftovers,” on my pad of paper and showed it to him. I was not in the least bit comfortable, but I didn’t worry I was dying imminently anymore and I knew that I could get through two days of pain, high though it was. My doctor made sure that I was well stocked on painkillers before I left, because that’s the considerate kind of guy he is 🙂

The next morning I woke up and realized I was swallowing… and again… and again… and then I jolted upright and rushed to the bathroom because the bleeding had begun again. Since I was sleeping on my back, slightly elevated (like I was supposed to) and the bleeding was coming from so far back, all the blood was just pouring down my throat like a thick, gross waterfall. I had no idea how long I’d been swallowing my own blood, but I was again alarmed that I was bleeding so much, even after the packing was in. It was coming from so far back, it was even behind the packing; it was like it wanted to run down the right side of my nose, but since that was now packed, it was overflowing down the left side and down my throat.

This time when Geoff called the ENT’s office, they told us to just come in right then, so I did, pale, woozy, feeling awful, still in my PJs, since I didn’t dare take the time to get dressed, nor make any movements which might cause my nose to bleed more. I sat in their lobby for a few minutes, while the bleeding had blessedly stopped momentarily, with a huge ball of paper towels clutched to my face and a plastic grocery bag in my other hand in case I started dripping. I laid my head against Geoff’s shoulder, closed my eyes and tried to forgot the lobby full of people who were staring at me in alarm.

The nurses were trying to clear a room for me when I suddenly felt the surge start back up for no reason. Geoff alerted the nurses. One of them brought me a kidney bowl to hold under my chin for dripping, then they were able to usher me off into a room away from the frightened eyes of the other clients.

A kidney bowl just like this! The curved shape makes for good under-face catching.

My ENT was in the middle of surgeries of his own, so I saw one of the other doctors, who was just as lovely and kind as everyone else had been. All the available nurses hovered around, trying to find anything to do to make me more comfortable; one wet paper towels and dabbed my forehead, another brought me some ice water to sip between procedures from the doctor. There was one nurse in particular who stayed right by my side the entire time, no matter how gross it got. She would frequently hold my hand or pat my knee during difficult parts and she was completely sincere about it; she wanted me to feel better and was doing any little thing she could think of. As truly, completely awful as I felt and as unpleasant of an experience as it all was, whenever I remember that nurse, I feel a surge of the warm love she radiated.

This doctor decided to remove the packing, since all it was doing was obstructing the view of where the blood was coming from, so he pulled it out… and my god, I don’t know which was worse, going in or coming out. Either way, it’s not something you want inside your nose. Removing it started a fresh flow, much of which was freely flowing down my face into the bowl under my chin.

The doctor kept needing me to tip my head back so he could see what was happening inside, which meant the blood kept going down my throat and getting swallowed. At one point I started to feel very nauseated (more so than I had all morning). I murmured to Geoff that I thought I might throw up and then a moment later, I was barfing up blood into my kidney bowl. Geoff held this bowl for me under my chin as I filled it, he and the nurse did some sort of quick shuffle with bowls and I filled a second one. If you’re ever given the choice to throw up blood or not, I would strongly recommend you choose to NOT do it. That was probably the grossest thing that’s ever happened to me, and the whole time, Geoff and my nurse stood right by me, holding bowls (she did have gloves, but it still had to be pretty unpleasant), smiling and patting encouragements and holding my increasingly icky hands. They are saints.

Shortly after that, the doctor was able to temporarily stop the gushing and I heard him and Geoff discussing that I would need an emergency surgery that day so they could go in and stop the bleeding for real. I was going to be transferred to a hospital where I’d wait for my ENT to finish his current surgeries, then he’d meet me at the hospital and work on me. They were weighing the options on either Geoff driving me over or having an ambulance come and take me when I asked if I could get up and wash my hands at the sink in the room, since they’d gotten spattered with blood and whatnot. I made it to the sink, slowly, and I washed my hands, carefully, and then… I’ve fainted before, I recognized the rushing deafness and darkness and knew I was about to go out so I hurried to plant my back against the cabinets and tried to slide down to the floor before I lost consciousness, thinking I’d have a shorter fall from there. Looking back, I can see it would have been better to just say, “Hey Geoff, I’m passing out,” but of course you’re not thinking very clearly at the moment. Luckily he saw what was happening so he leaped across the small room, nimbly avoiding expensive machines and he grabbed me before I hit the floor. From his quick action, I never quite lost consciousness, but I was pretty well a rag doll for a few minutes.

At that point, the doctor wisely decided I should travel to the hospital by ambulance.

That was a first for me; an ambulance ride. The medics were all very nice and clearly knew what they were doing; they got me on a saline IV before we even made it to the hospital, which was only a couple miles away. I did decide that I didn’t like laying down and facing backwards in a moving car though, it would have made me carsick if the ride lasted much longer. Although I don’t think that I would have had anything else to try and throw up.

The hospital got me situated in a room pretty quickly, a nice one by hospital standards; it was private, I had my own bed, bathroom and TV and there was a curtain we could draw over the glass doors. Since at that point I was stable, we just had to wait a while for my doctor to finish his other surgeries and come over to the hospital. So for a while, everything was surreal and strangely calm. We watched some TV. I saw my first episode ever of Seinfeld. The staff came, drew blood, determined I did not need a blood transfusion, and switched out my now-empty saline bag for another one.

In my bed at the hospital, still being a trooper. If you look carefully you can see how pale my lips are compared to the rest of my face.

It was fairly late in the day when my ENT was able to get over to me, but he seemed as fresh and alert as if I’d been his first patient of the day. He brought an assistant with him and they used one of the hospital’s anesthesiologists. We spoke to the anesthesiologists for a little while before they took me into the surgery room and Geoff mentioned that they’d had trouble intubating me for the first surgery. The anesthesiologists looked at me assessingly and said, “I don’t think I’ll have trouble,” which he did not.

For me, then it was being wheeled into different rooms and getting various IV injections; the first one made you really, really relaxed and the second made you sleep. As a chronic insomniac, I wouldn’t mind that every night 🙂 As I was told later, once I was under, my doctor looked inside my nose and determined that one artery at the very back of my sinuses, where the two sides join together had simply burst for no good reason, and that was what was causing all the bleeding. He cauterized the offending artery along with a few of its friends for good measure, filled up my right side thoroughly with the Jello packing and let me wake up. I spent a little longer in the hospital, in a different room with Geoff. The anesthesia had again made me a little queasy, but the nurse gave me an injection which made that stop.

Groggy and pale after the emergency surgery, but I could muster the will for a thumbs-up, goddammit

And then we finally went home, more than 12 hours since we’d left it. Thankfully, our neighbors had come and let Calantha outside much earlier in the day and also fed her dinner. She and the cats were happy to see me and concerned about all the medical smells on me. I think I stumbled around for a little bit, while Geoff feed the cats, I found PJs to wear which hadn’t just been in a hospital, all the while Geoff kept telling me to lay down; I don’t actually remember very much of this part. But I think I fell asleep fairly quickly. As soon as I woke up the next morning, I checked myself anxiously; did I taste blood? Was everything ok? And for the first time in several days, I was ok.

Geoff stayed with me for a couple of days which ended up being really needed. I was extremely weak (and extraordinarily pale, everyone kept telling me, even considering my baseline paleness) and almost any movement made me very, very dizzy and light-headed. Geoff made me lay down as much as he could, but I’d have to get up periodically to use the bathroom, or for some other task he couldn’t do for me. It was a procedure though. First, sit up in bed instead of laying down, propped up on a pile of pillows. Let the dizziness pass. Swing legs over side of bed and wait. Let the dizziness pass. Slowly stand and immediately put your hand (and probably face) on the wall while you ride out the biggest wave of dizziness. Once you’re a little more settled, you can probably walk the 10 feet to the bathroom. Geoff hovered anxiously every time I got up just in case I started to go down again.

I went back to see my ENT two days later and my GOODNESS, did EVERY person in that office remember exactly who I was. I made quite the impression on them. (Even now, as soon as I walk in, there’s a chorus of greetings from the whole staff.) Everyone was happy that the surgery had worked and I wasn’t bleeding at all any more. So why did the artery burst in the first place? No one has any idea. It’s just a mystery. My doctor talked about how every now and then, you’ll have a patient who bleeds later on the day of the surgery, or maybe the day after, but 6 days later is unheard of. There I go again, baffling doctors with my weird body. I felt so, so much better compared to how I’d felt at the beginning of the week, I didn’t even really care how weak I was, I was just glad to be not bleeding, not at a medical facility, at home and not nauseated.

One of the first days I was able to stand for long on my own. But look, I’m not at the doctor’s! I’m not at the hospital! I’m wearing 18 layers because I have no blood, yes, but I’m home and on the mend!

My doctor tells me I lost 2-3 pints of blood between the 2 days of bleeding, which is significant, especially for someone as small as I am. And frankly, I’m still feeling the effects of it. I learned that it takes 120 days for a blood cell to replace itself, so even though I’m taking iron supplements to help my body along, it’ll be the middle of February before all my blood is replaced. It’s getting better, but there was a while where I could hardly do anything that involved walking for more than a few feet without getting dizzy and winded and having to sit down. Even now, I still have to be careful. For some reason it there’s any kind of incline I’m walking up, even a very gently sloping one, I feel like Sisyphus pushing his boulder up a hill. I still have to take a break halfway through walking the one flight of stairs at my therapist’s office, and another breather when I get to the top. It is getting better though, noticeably so, and my doctor assures me this is normal for the amount of blood I lost.

I also found out that the culture they’d sent in of the goo inside my sinuses had turned out to be harboring a staph infection, which the antibiotics I was on as a natural result of the surgery should get rid of also. I ended up needing to go two rounds with the antibiotics to really clear it up but it seems to be gone now. And I have not had a single cold since I had my surgery, which goes to prove that really was the cause of all my summer sicknesses.

Overall, this was definitely not a fun experience but there were some good things that came out of it. I know what a caring and attentive ENT I have now, along with the entire staff. I practiced really resting and allowing others to do things for me when I needed them to, which is hard for me to do. I’d much rather just do it on my own even if it makes me pass out than bother anyone else. I watched Winter’s Tale and had a lovely afternoon with my mom, who came to stay with me one of the days Geoff had to be at work. I felt loved and cared for. And then, of course, there’s this… my mom brought this “to cheer me up” because of who was on the cover:

Thanks, mom 🙂 And big thanks my neighbors, my ENT and all of his staff, the ambulance workers and everyone at the hospital, if any of them are reading this somehow. My friends and family were very diligent about checking in with how I was feeling by text, which was perfect as that was about all the communicating I could do.

And of course big, HUGE thanks to Geoff for taking such excellent care of me! He always does, but I always appreciate it!